Author(s):
- Sonali R Mishra
- Andrew D Miller
- Shefali Haldar
- Maher Khelifi
- Jordan Eschler
- Rashmi G Elera
- Ari H Pollack
- Wanda Pratt
Abstract:
The hospital setting creates a high-stakes environment where patients’ lives depend on accurate tracking of health data. Despite recent work emphasizing the importance of patients’ engagement in their own health care, less is known about how patients track their health and care in the hospital. Through interviews and design probes, we investigated hospitalized patients’ tracking activity and analyzed our results using the stage-based personal informatics model. We used this model to understand how to support the tracking needs of hospitalized patients at each stage. In this paper, we discuss hospitalized patients’ needs for collaboratively tracking their health with their care team. We suggest future extensions of the stage-based model to accommodate collaborative tracking situations, such as hospitals, where data is collected, analyzed, and acted on by multiple people. Our findings uncover new directions for HCI research and highlight ways to support patients in tracking their care and improving patient safety.
Documentation:
https://doi.org/10.1145/3173574.3174224
References:
1. American Hospital Association. Fast Facts on US Hospitals. 2016 Retrieved from http://www.aha.org/research/rc/stat-studies/fast-facts.shtml.
2. Ayobi Amid, Marshall Paul, Cox Anna, Chen Yunan. Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems (CHI ‘17) ACM; 2017. Quantifying the body and caring for the mind: Understanding self-tracking in multiple sclerosis; pp. 6889–6901. http://doi.org/10.1145/3025453.3025869. [Google Scholar]
3. Benham-Hutchins Marge, Staggers Nancy, Mackert Michael, Johnson Alisha H, DeBronkart Dave. I want to know everything: A qualitative study of perspectives from patients with chronic diseases on sharing health information during hospitalization. BMC Health Services Reseasrch. 2017;17:529–538. http://doi.org/10.1186/s12913-017-2487-6. [PMC free article] [PubMed] [Google Scholar]
4. Bickmore Timothy W, Pfeifer Laura M, Jack Brian W. Taking the time to care: empowering low health literacy hospital patients with virtual nurse agents. Proceedings of the 27th international conference on Human factors in computing systems – CHI 09. 2009:1265–1274. http://doi.org/10.1145/1518701.1518891.
5. Brennan Patricia Flatley, Casper Gail R, Burke Laura J, et al. Technology-enhanced practice for patients with chronic cardiac disease: home implementation and evaluation. Heart & Lung : The Journal of Critical Care. 2010;39(6 Suppl):S34–S46. http://doi.org/10.1016/j.hrtlng.2010.09.003.Technology. [PMC free article] [PubMed] [Google Scholar]
6. Caligtan Christine A, Carroll Diane L, Hurley Ann C, Gersh-Zaremski Ronna, Dykes Patricia C. Bedside information technology to support patient-centered care. International Journal of Medical Informatics. 2012;81(7):442–451. http://doi.org/10.1016/j.ijmedinf.2011.12.005. [PubMed] [Google Scholar]
7. Chung Chia-Fang, Agapie Elena, Schroeder Jessica, Mishra Sonali, Fogarty James, Munson Sean A. Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems (CHI ‘17) ACM; 2017. When personal tracking becomes social: Examining the use of Instagram for healthy eating; pp. 1674–1687. http://doi.org/10.1145/3025453.3025747. [PMC free article] [PubMed] [Google Scholar]
8. Chung Chia-Fang, Dew Kristin, Cole Allison, et al. Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing (CSCW ‘16) ACM; 2016. Boundary negotiating artifacts in personal informatics: Patient-provider collaboration with Patient-generated data; pp. 770–786. http://doi.org/http://dx.doi.org/10.1145/2818048.2819926. [PMC free article] [PubMed] [Google Scholar]
9. Consolvo Sunny, Klasnja Predrag, McDonald David W, et al. Proceedings of the 10th international conference on Ubiquitous computing (UbiComp ‘08) ACM; 2008. Flowers or a Robot army?: Encouraging Awareness & Activity with Personal, Mobile Displays; pp. 54–63. http://doi.org/10.1145/1409635.1409644. [Google Scholar]
10. Dalal Anuj K, Dykes Patricia C, Collins Sarah, et al. A web-based, patient-centered toolkit to engage patients and caregivers in the acute care setting: A preliminary evaluation. Journal of the American Medical Informatics Association. 2016;23:80–87. http://doi.org/10.1093/jamia/ocv093. [PMC free article] [PubMed] [Google Scholar]
11. Delbanco Tom, Walker Jan, Bell Sigall K, et al. Inviting Patients to Read Their Doctors’ Notes: A Quasi-Experimental Study and a Look Ahead. Annals of Internal Medicine. 2012;157:461–70. http://doi.org/10.7326/0003-4819-157-7-201210020-00002. [PMC free article] [PubMed] [Google Scholar]
12. Dykes Patricia C, Rozenblum Ronen, Dalal Anuj, et al. Prospective evaluation of a multifaceted intervention to improve outcomes in intensive care. Critical Care Medicine. 2017;45(8):e806–e813. http://doi.org/10.1097/CCM.0000000000002449. [PMC free article] [PubMed] [Google Scholar]
13. Epstein Daniel A, Ping An, Fogarty James, Munson Sean A. A Lived Informatics Model of Personal Informatics. Proceedings of the 2015 ACM International Joint Conference on Pervasive and Ubiquitous Computing – UbiComp ‘15. 2015:731–742. http://doi.org/10.1145/2750858.2804250.
14. Felipe Sergio, Singh Aneesha, Bradley Caroline, Williams Amanda Cdec, Bianchi-berthouze Nadia. Roles for personal informatics in chronic pain. 9th International Conference on Pervasive Computing Technologies for Healthcare. 2015:161–168. http://doi.org/http://dx.doi.org/10.4108/icst.pervasivehealth.2015.259501.
15. Graffigna Guendalina, Barello Serena, Bonanomi Andrea, Lozza Edoardo. Measuring Patient Engagement: Development and Psychometric Properties of the Patient Health Engagement (PHE) Scale. Frontiers in Psychology. 2015 Mar;6:1–10. http://doi.org/10.3389/fpsyg.2015.00274. [PMC free article] [PubMed] [Google Scholar]
16. Greene J, Hibbard JH, Sacks R, Overton V, Parrotta CD. When Patient Activation Levels Change, Health Outcomes And Costs Change, Too. Health Affairs. 2015;34:431–437. http://doi.org/10.1377/hlthaff.2014.0452. [PubMed] [Google Scholar]
17. Greene Jessica, Hibbard Judith H, Sacks Rebecca, Overton Valerie. When Seeing the Same Physician, Highly Activated Patients Have Better Care Experiences Than Less Activated Patients. Health Affairs. 2013;32:1299–1305. http://doi.org/10.1377/hlthaff.2012.1409. [PubMed] [Google Scholar]
18. Gruman Jessie, Rovner Margaret Holmes, French Molly E, et al. From Patient Education to Patient Engagement: Implications for the Field of Patient Education. Patient Education and Counseling. 2010;78(3):350–356. http://doi.org/10.1016/j.pec.2010.02.002. [PubMed] [Google Scholar]
19. Haldar Shefali, Mishra Sonali R, Khelifi Maher, Pollack Ari H, Pratt Wanda. Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems (CHI ‘17) ACM; 2017. Opportunities and design considerations for peer support in a hospital setting; pp. 867–879. http://doi.org/10.1145/3025453.3026040. [PMC free article] [PubMed] [Google Scholar]
20. HealthIT.gov. What is a Patient Portal? 2015 Retrieved from https://www.healthit.gov/providers-professionals/faqs/what-patient-portal.
21. Hibbard Judith H, Stockard Jean, Mahoney Eldon R, Tusler Martin. Development of the Patient Activation Measure (PAM): Conceptualizing and Measuring Activation in Patients and Consumers. Health services research. 2004;39:1005–1026. http://doi.org/10.1111/j.1475-6773.2004.00269.x. [PMC free article] [PubMed] [Google Scholar]
22. Hong Matthew K, Feustel Clayton, Agnihotri Meeshu, Silverman Max, Simoneaux Stephen F, Wilcox Lauren. Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems (CHI ‘17) ACM; 2017. Supporting families in reviewing and communicating about radiology imaging studies; pp. 5245–5256. http://doi.org/10.1145/3025453.3025754. [PMC free article] [PubMed] [Google Scholar]
23. Hong Matthew K, Wilcox Lauren, Machado Daniel, Olson Thomas A, Simoneaux Stephen F. Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (CHI ‘16) ACM; 2016. Care Partnerships : Toward Technology to Support Teens ‘ Participation in Their Health Care; pp. 5337–5349. http://doi.org/10.1145/2858036.2858508. [PMC free article] [PubMed] [Google Scholar]
24. Irizarry Taya, Shoemake Jocelyn, Nilsen Marci Lee, Czaja Sara, Beach Scott, DeVito Dabbs Annette. Patient portals as a tool for health care engagement: A mixed-method study of older adults with varying levels of health literacy and prior patient portal use. Journal of Medical Internet Research. 2017;19(3):e99. http://doi.org/10.2196/jmir.7099. [PMC free article] [PubMed] [Google Scholar]
25. Kelly Michelle M, Hoonakker Peter LT, Dean Shannon M. Using an Inpatient Portal to Engage Families in Pediatric Hospital Care. Journal of the American Medical Informatics Association. 2016;24(1):153–161. http://doi.org/10.1093/jamia/ocw070. [PMC free article] [PubMed] [Google Scholar]
26. Kendall Logan, Mishra Sonali R, Pollack Ari, Aaronson Barry, Pratt Wanda. Making background work visible: Opportunities to address patient information needs in the hospital. AMIA Annual Symposium proceedings. 2015:1957–66. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/26958295. [PMC free article] [PubMed]
27. Kessels Roy PC. Patients’ memory for medical information. Journal of the Royal Society of Medicine. 2003;96:219–22. http://doi.org/10.1258/jrsm.96.5.219. [PMC free article] [PubMed] [Google Scholar]
28. Larsson Inga E, Sahlsten Monika JM, Segesten Kerstin, Plos Kaety AE. Patients’ perceptions of barriers for participation in nursing care. Scandinavian Journal of Caring Sciences. 2011;25(3):575–582. http://doi.org/10.1111/j.1471-6712.2010.00866.x. [PubMed] [Google Scholar]
29. Li Ian, Dey Anind, Forlizzi Jodi. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ‘10) ACM; 2010. A stage-based model of personal informatics systems; pp. 557–566. http://doi.org/10.1145/1753326.1753409. [Google Scholar]
30. Li Ian, Dey Anind, Forlizzi Jodi. Proceedings of the 13th international conference on Ubiquitous computing (UbiComp ‘11) ACM; 2011. Understanding my data, myself: Supporting self-reflection with ubicomp technologies; pp. 405–414. http://doi.org/10.1145/2030112.2030166. [Google Scholar]
31. MacLeod Haley, Tang Anthony, Carpendale Sheelagh. Personal informatics in chronic illness management. Proceedings of Graphics Interface 2013 (GI ‘13), Canadian Information Processing Society. 2013:149–156. Retrieved from http://hcitang.org/papers/2013-gi2013-personal-informatics.pdf.
32. Mamykina Lena, Levine Matthew E, Davidson Patricia G, Smaldone Arlene M, Elhadad Noemie, Albers David J. From personal informatics to personal analytics: Investigating how clinicians and patients reason about personal data generated with self-monitoring in diabetes. In: Patel Vimla L, Arocha Jose F, Ancker Jessica S., editors. Cognitive Informatics in Health and Biomedicine: Understanding and Modeling Health Behaviors. Springer International Publishing; 2017. pp. 301–313. http://doi.org/10.1007/978-3-319-51732-2. [Google Scholar]
33. Mamykina Lena, Miller Andrew D. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ‘10) ACM; 2010. Constructing identities through storytelling in diabetes management; pp. 1203–1212. http://doi.org/10.1145/1753326.1753507. [Google Scholar]
34. Mamykina Lena, Mynatt Elizabeth, Davidson Patricia, Greenblatt David. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ‘08) ACM; 2008. MAHI: Investigation of social scaffolding for reflective thinking in diabetes management; pp. 477–486. http://doi.org/10.1145/1357054.1357131. [Google Scholar]
35. Mann L. From “Silos” to seamless healthcare: Bringing hospitals and GPs back together again. Medical Journal of Australia. 2005;182(1):34–7. [PubMed] [Google Scholar]
36. McMurray Anne, Chaboyer Wendy, Wallis Marianne, Johnson Joanne, Gehrke Tanya. Patients’ perspectives of bedside nursing handover. Collegian. 2011;18:19–26. http://doi.org/10.1016/j.colegn.2010.04.004. [PubMed] [Google Scholar]
37. Mentis Helena M, Komlodi Anita, Schrader Katrina, et al. Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems (CHI ‘17) ACM; 2017. Crafting a view of self-tracking data in the clinical visit; pp. 5800–5812. http://doi.org/10.1145/3025453.3025589. [Google Scholar]
38. Miller Andrew D, Pollack Ari H, Pratt Wanda. Bursting the information bubble: Identifying opportunities for pediatric patient-centered technology. AMIA Annual Symposium Proceedings. 2016:894–903. [PMC free article] [PubMed] [Google Scholar]
39. Miller Andrew D, Mishra Sonali R, Kendall Logan, Haldar Shefali, Pollack Ari H, Pratt Wanda. Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing (CSCW ‘16) ACM; 2016. Partners in Care: Design Considerations for Caregivers and Patients During a Hospital Stay; pp. 756–769. http://doi.org/http://10.1145/2818048.2819983. [PMC free article] [PubMed] [Google Scholar]
40. Mishra Sonali R, Haldar Shefali, Pollack Ari H, et al. Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (CHI ‘16) ACM; 2016. “Not just a receiver”: Understanding patient behavior in the hospital environment; pp. 3103–3114. http://doi.org/10.1145/2858036.2858167. [PMC free article] [PubMed] [Google Scholar]
41. O’Leary Kevin J, Lohman Mary E, Culver Eckford, Killarney Audrey, Smith G Randy, Liebovitz David M. The effect of tablet computers with a mobile patient portal application on hospitalized patients’ knowledge and activation. Journal of the American Medical Informatics Association. 2016;23(1):159–165. http://doi.org/10.1093/jamia/ocv058. [PMC free article] [PubMed] [Google Scholar]
42. Young Park Sun, Chen Yunan. Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems (CHI ‘17) ACM; 2017. Patient strategies as active adaptation: Understanding patient behaviors during an emergency visit; pp. 880–892. http://doi.org/10.1145/3025453.3025978. [Google Scholar]
43. Pina Laura R, Sien Sang-Wha, Ward Teresa, et al. Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing (CSCW ‘17) ACM; 2017. From personal informatics to family informatics; pp. 2300–2315. http://doi.org/10.1145/2998181.2998362. [Google Scholar]
44. Piras Enrico Maria, Miele Francesco. Clinical self-tracking and monitoring technologies: Negotiations in the ICT-mediated patient–provider relationship. Health Sociology Review. 2017;26(1):38–53. http://doi.org/10.1080/14461242.2016.1212316. [Google Scholar]
45. Prey Jennifer E, Woollen Janet, Wilcox Lauren, et al. Patient Engagement in the Inpatient Setting: A Systematic Review. Journal of the American Medical Informatics Association. 2014;21:742–750. http://doi.org/10.1136/amiajnl-2013-002141. [PMC free article] [PubMed] [Google Scholar]
46. Rajabiyazdi Fateme, Perin Charles, Vermeulen Jo, MacLeod Haley, Gromala Diane, Carpendale Sheelagh. Proceedings of Pervasive Computing Technologies for Healthcare, 2017. ACM; 2016. Differences that matter: In-clinic communication challenges; pp. 53–59. http://doi.org/10.1145/1235. [Google Scholar]
47. Rooksby John, Rost Mattias, Morrison Alistair, Chalmers Matthew Chalmers. Proceedings of the 32nd annual ACM conference on Human factors in computing systems (CHI ‘14) ACM; 2014. Personal Tracking as Lived Informatics; pp. 1163–1172. http://doi.org/10.1145/2556288.2557039. [Google Scholar]
48. Schroeder Jessica, Hoffswell Jane, Chung Chia-fang, Fogarty James, Munson Sean, Zia Jasmine. Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing (CSCW ‘17) ACM; 2017. Supporting patient-provider collaboration to identify individual triggers using food and symptom journals; pp. 1726–1739. http://doi.org/10.1145/2998181.2998276. [PMC free article] [PubMed] [Google Scholar]
49. Sehgal Niraj L, Green Adrienne, Vidyarthi Arpana R, Blegen Mary A, Wachter Robert M. Patient whiteboards as a communication tool in the hospital setting: A survey of practices and recommendations. Journal of Hospital Medicine. 2010;5(4):234–239. http://doi.org/10.1002/jhm.638. [PubMed] [Google Scholar]
50. Skeels Meredith M, Unruh Kenton T, Powell Christopher, Pratt Wanda. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ‘10) ACM; 2010. Catalyzing Social Support for Breast Cancer Patients; pp. 173–182. http://doi.org/10.1145/1753326.1753353. [PMC free article] [PubMed] [Google Scholar]
51. Skeels Meredith, Tan Desney S. Proceedings of the 1st ACM International Health Informatics Symposium (IHI ‘10) ACM; 2010. Identifying Opportunities for Inpatient-Centric Technology; pp. 580–589. http://doi.org/http://doi.org/10.1145/1882992.1883087. [Google Scholar]
52. Valdez Rupa S, Holden Richard J, Novak Laurie L, Veinot Tiffany C. Transforming consumer health informatics through a patient work framework: connecting patients to context. Journal of the American Medical Informatics Association. 2015;22:2–10. http://doi.org/10.1136/amiajnl-2014-002826. [PMC free article] [PubMed] [Google Scholar]
53. Vardoulakis Laura Pfeifer, Karlson Amy, Morris Dan, Smith Greg, Gatewood Justin, Tan Desney. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ‘12) ACM; 2012. Using mobile phones to present medical information to hospital patients; p. 1411. http://doi.org/10.1145/2207676.2208601. [Google Scholar]
54. Vawdrey David K, Wilcox Lauren G, Collins Sarah A, et al. A Tablet Computer Application for Patients to Participate in Their Hospital Care. AMIA Annual Symposium proceedings. 2011:1428–35. Retrieved from http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=3243172&tool=pmcentrez&rendertype=abstract. [PMC free article] [PubMed]
55. West Peter, Giordano Richard, Van Kleek Max, Shadbolt Nigel. Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (CHI ‘16) ACM; 2016. The quantified patient in the doctor’s office: Challenges & opportunities; pp. 3066–3078. http://doi.org/10.1145/2858036.2858445. [Google Scholar]
56. Wilcox Lauren, Morris Dan, Tan Desney, Gatewood Justin. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ‘10) ACM; 2010. Designing Patient-Centric Information Displays for Hospitals; pp. 2123–2132. http://doi.org/10.1145/1753326.1753650. [PMC free article] [PubMed] [Google Scholar]
57. Wilcox Lauren, Woollen Janet, Prey Jennifer, et al. Interactive tools for inpatient medication tracking: A multi-phase study with cardiothoracic surgery patients. Journal of the American Medical Informatics Association. 2016;23:144–158. http://doi.org/10.1093/jamia/ocv160. [PMC free article] [PubMed] [Google Scholar]
58. Woollen Janet, Prey Jennifer, Wilcox Lauren, et al. Patient Experiences Using an Inpatient Personal Health Record. Applied Clinical Informatics. 2016;7:446–460. http://doi.org/10.4338/ACI-2015-10-RA-0130. [PMC free article] [PubMed] [Google Scholar]
59. Zhu Haining, Colgan Joanna, Reddy Madhu, Choe Eun Kyoung. Sharing patient-generated data in clinical practices: An interview study. AMIA Annual Symposium proceedings. 2017:1303–1312. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/28269928%5Cn http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=PMC5333267. [PMC free article] [PubMed]
60. Zikmund-Fisher Brian J, Scherer Aaron M, Witteman Holly O, et al. Graphics help patients distinguish between urgent and non-urgent deviations in laboratory test results. Journal of the American Medical Informatics Association. 2017;24(3):520–528. http://doi.org/10.1093/jamia/ocw169. [PMC free article] [PubMed] [Google Scholar]